Endometriosis: the hidden threat to Women’s Health - Report from Scottish Parliament Event

Monday, March 24, 2014
Endometriosis UK representative stand with members of the Scottish Parliament

Scotland's Cabinet Minister for Health and Wellbeing, Alex Neil, welcomed proposals and pledged Scottish Government support to help sufferers of endometriosis at an event at the Parliament, held by the University of Edinburgh and Endometriosis UK. Proposals around awareness, service provision through centres of excellence in Scotland and research funding will be discussed with Scottish Government officials on how to be taken forward.

Aileen McLeod, as the hosting MSP, introduced the evening with an impassioned call for change supported by Dr Andrew Horne from University of Edinburgh and Ms Sandra Engstrom from Endometriosis UK. The audience of over 100 people including MSPs, patients and healthcare professionals heard from Helen North, Chief Executive of Endometriosis UK, about the challenges of endometriosis, from Dr Cameron Martin, senior consultant at Edinburgh Royal Infirmary, around the concept of a managed network of care throughout Scotland led by four centres of expertise and Lone Hummelshoj of the World Endometriosis Society on the cost of endometriosis and the need for collaborative research.

However the most powerful speeches came from patients Lyndsey Hogg and business expert and TV commentator, Kate Hardcastle, who shared their personal stories. Lyndsey explained that after 5 surgical operations and years of horrendous pain she was now facing disciplinary procedures from her work as a serving police officer. Kate Hardcastle told the audience how endometriosis was a “battle too far” alongside all the other struggles women have to face, but that in some ways it had made her stronger.

kate hardcastle and speaks at a scottish parliament event

Lyndsey Hogg (left) and Kate Hardcastle (right) share their personal journeys with endometriosis.

Having heard the speakers, Mr Neil recognised the need to put endometriosis‎ on a par with asthma and diabetes because as many women in Scotland suffer with endometriosis as with those other better known conditions. He also agreed that more needed to be done and invited Dr Andrew Horne from the University of Edinburgh, Helen North from Endometriosis UK, Dr Cameron Martin from Edinburgh Royal Infirmary and Lyndsey Hogg as a patient representative, to a meeting to discuss how things could be improved.

The campaign is calling for the opportunity to work together with the Scottish Government in taking forward a number of proposals: - An educational and awareness-raising programme of actions to help increase awareness and understanding of endometriosis amongst the general public, healthcare practitioners (GPs in particular) and employers. The development of at least four centres of expertise for endometriosis in Scotland (Aberdeen, Edinburgh, Glasgow and Dundee) with an initial phase of a feasibility study to analyse the potential of how such a new model of care could significantly improve the quality of life, the quality of care and support, as well as improve the diagnostic experience and outcomes for women suffering from endometriosis.

Alex Neil, the Scottish Parliament Cabinet Minister for Health and Wellbeing, addresses the crowd

Alex Neil, the Scottish Parliament Cabinet Minister for Health and Wellbeing, addresses the crowd

Helen North, Chief Executive of Endometriosis UK, said: “We are delighted by the response of Mr Neil to the situation that we have outlined during this event and we look forward to working closely with him and his team to realise the potential that a collaborative partnership could bring to women in Scotland with endometriosis. This project has the potential to set the standards of care, support and treatment for endometriosis for other practitioners around the UK and elsewhere.”

Aileen McLeod (left) with Endometriosis UK Edinburgh Support Group Leader, Sandra Engstrom, and Lynsey Hogg

Aileen McLeod (left) with Endometriosis UK Edinburgh Support Group Leader, Sandra Engstrom, and Lynsey Hogg

Aileen McLeod, MSP for South Scotland, said: “I was delighted to host the reception on behalf of Endometriosis UK and the University of Edinburgh in the Scottish Parliament. All of the speakers did a fantastic job in giving us a much better insight into and understanding of many of the issues and challenges surrounding endometriosis as well as a way forward in how best we can care for and support the thousands of women who suffer from it every single day of their lives.

It was really good to have the opportunity to meet with many of the women who suffer from endometriosis and for them to share with us their own personal experiences. There is clearly much more we can all be doing in raising greater awareness and understanding and educating people across the board and of course in ensuring that there is early diagnosis which is so critical to improving the quality of life for those women suffering from endometriosis. This event was I hope very much an important step in that direction”.

Carol Smillie stands with Endometriosis UK representatives
Carol Smillie showed her support for Endometriosis UK by attending the event

Dr Andrew Horne, a Senior Lecturer and Consultant Gynaecologist at the MRC Centre for Reproductive Health in Edinburgh, said: “It is fantastic that the Scottish Government are listening to medical practitioners, researchers and sufferers of endometriosis. We hope that we will all be able to work together to raise awareness of the condition and support the development of specialist centres in Scotland.”

Women with endometriosis, their partners and family members are invited to attend an Endometriosis Information Day being run at the University of Edinburgh on Sat 5th April. Tickets are £25 each and bookings can be made using our Endometriosis UK Information Day booking form.